A Change Is Gonna Come: Improving Clinical Trial Diversity Starts with You

November 28 2023  

Like many of you, I wasn’t very familiar with the ins and outs of clinical trials before joining this industry. I had only been exposed to plain old common misperceptions which you may have also heard, like it’s best not to join a trial because they’re too dangerous, you’re treated like a guinea pig, or if I’m really sick I might get a sugar pill or placebo instead of the real drug. However, during my tenure supporting sponsors, CROs, and sites at eClinical technology companies, including Greenphire – I’ve learned about patient rights and the strict guidelines the FDA has in place to ensure all participants are treated both honestly and ethically.

As many of you know, the FDA has also issued numerous guidelines aimed at improving  clinical trial diversity, most recently in 2022. While increasing diversity in clinical trials isn’t a new industry mission, it has been a hot topic as of late – with good reason. According to Food and Drug Administration data, in 2020 75% of US trial participants were white, 11% were Hispanic, 8% were Black, and 6% were Asian, a marked difference from the general population. This happens despite certain communities experiencing a higher incidence of disease.

For me, learning about, and improving clinical trial diversity is personal. As you can see by the grays in my beard that I’ve been around for a minute or two, so it should come as no surprise that I’ve heard and seen some things that have formed a foundation of what I believe to be true. What might surprise you by looking at me is that I grew up in a biracial household coming from very different backgrounds – my father’s family is African American, and my mother’s family is Caucasian, both playing a large part in shaping my beliefs. Growing up, my father’s family lacked trust in clinical trials, undoubtedly due in part to historical incidents, such as what happened to Henrietta Lacks. My mother’s family also lacked trust in clinical trials, which looking back is a bit surprising given the fact that my grandfather was a physician and my grandmother was a nurse.

Community Connections: Building a Network of Inspiration

I recently attended the Society for Clinical Research Sites Global Annual Summit in sunny Florida, a big change from my hometown of Rochester and the unpredictable weather of Western New York. At Greenphire, I’m often the first point of contact that new sponsors, CROs and sites have when considering implementing our solutions, so I was looking forward to meeting many of those folks face-to-face.

The event included numerous tracks and impactful sessions, including one on site payments moderated by my colleague Justin Vega, as well as trends in diversity and inclusion in clinical trials. Understanding the obstacles in the way of progress are fundamental to driving change and improving representation, and research sites are central to that conversation.

Below you’ll find insights I gathered from the conference, so you can also understand the key issues which prevent certain folks from enrolling and others from staying in studies.

  • The children are our future: I had the opportunity to hear from Zahara Weeks, an incredibly strong young woman living with sickle cell disease who inspired us all with a hope for a cure and her determination to live her best life. Hearing Zahara’s story firsthand was an incredibly powerful reminder of all the good the industry is doing, and what one individual can do to make a difference. For some inspiration you can see Zahara in this recorded session – Patients: The Center & Purpose of Our Work. In support of her mission, Zahara also wrote a book ‘Born a Warrior’ that can be purchased here.
  • Changing the face of clinical trial employees: I had the pleasure of meeting Danielle Mitchell, founder of Black Women in Clinical Research (BWICR), who is on a mission to educate, empower, support, and help black women thrive in the clinical research industry, which we now know that a more diverse and inclusive workforce contributes to the recruitment and retention of a more diverse and inclusive participant population. If your organization is interested in diversifying your staff, BWICR can be reached here.
  • Building a mission: I was also thrilled to meet both Drs. Diana Foster and Jerome Adams with the Association of Diversity in Clinical Trials, a diversity-focused organization working to develop standards to ensure representation for underrepresented populations in clinical trials. Dr. Adams, who formerly served as the 20th United States Surgeon General, believes in providing academic access to STEM programs for children from underrepresented communities to be the foundation for fostering diversity in clinical trials. Adams himself hadn’t considered a career in medicine until he was cared for by an African American doctor. Seeing yourself in others you admire, can inspire others to pursue similar career paths. It also builds trust. For example, when patients visit a clinical trial clinic and see staff who they can relate to, it builds credibility and removes doubt. In short, further access to STEM education, and diverse site staff, can equate to more diverse workforces, enrollment and retention.
  • Understanding the blockers: According to the 2023 CISCRP Perceptions and Insights Study, “having to travel to the study clinic” was cited as the number one reason that made trial participation disruptive. This is reinforced by our own Greenphire data which tracks that, on average, the study clinic may be as far as 65 miles from the individual’s home. This is incredibly important as travel to and from the site is a challenge that disproportionately affects underrepresented communities. Time, cost and effort are key reasons which impact decisions for enrolling and staying in research. These non-medical factors are ones that can be overcome by providing supportive programs, such as financial compensation and travel support. In fact, a recent sponsor who works with Greenphire shared this testimonial with our team:

“ClinCard and ConneX can definitely help improve patient diversity, which can help speed up enrollment, or help a site over-enroll versus their targets, as they have a larger pool from which to pull patients. Greater diversity of patients in a trial also helps deliver a deeper data set.”

Looking to the future

The longer I’ve been in the industry, the more evident it’s become that improving diversity in clinical trials won’t happen overnight, but together we can take meaningful steps to improve education, awareness, and building trust within diverse communities.

Merck was honored at this year’s SCRS conference as the sponsor of the year; what you might not know is that when Merck made a commitment to increase diversity in their clinical trials, they turned to Greenphire. In their 2022-2023 Impact Report, Merck shared that they’ve selected our flagship ClinCard solution to remove financial and logistical barriers that can make it difficult for patients to remain enrolled in studies.

Here’s additional information and resources which may be of value to you and your organization as you build your diversity action plans:

Greg Kenney
Market Development Associate + All In Committee Member

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